It’s been a long time since I last wrote my blog. There have been many reasons for my inactivity including going on Holiday, having my PEG insertion, my weakening voice and hands and also the end of the Optimist campaign, as I handed over to this year’s team optimism. I wish this year’s campaign every success and hope all the team optimism members get a lot out of the experience and manage to raise awareness of MND and the work of the Association.
For my part being involved in a campaign for the MND Association has been a mainly positive one especially when I look back and consider all the amazing people I have met, been reacquainted with or received support from for the last 12 months. Also, it is extremely doubtful that I would have completed an album of original songs without the aims of the optimist campaign not focusing me and driving us onwards. The album and awareness campaign are things I am very proud of and I am grateful to the MND Association and the MND community for their encouragement in helping me achieve these things.
It hasn’t all been plain sailing mind you. The headache of trying to promote an album and campaign has been testing at times and I have found increasingly the tag of Alistair the optimist to be an aspirational one and not always a true reflection of my state of mind. It has always been my understanding that optimism is not a state of unbridled joy and happiness but perhaps one in which we hope to achieve good things despite trying circumstances.
I know the campaign has increased awareness and understanding of MND I just hope that we haven’t missed an opportunity to really make a breakthrough in putting MND out there in the public domain alongside other (often better known and understood) conditions such as Parkinson’s, MS etc. Doing this is essential and until we do significantly raise awareness of MND many people living with MND will continue to be poorly served by aspects of the NHS and social services. Whatever happens next, I have an enormous sense of pride in what I have achieved over the last year and the legacy I wanted to leave for my children.
Changing the subject completely – it’s been three weeks since I stayed in hospital for the insertion of my PEG. In case you haven’t come across it before a PEG is a feeding tube which is inserted through the stomach wall using an endoscope and small incision. It is a fairly minor and common procedure for people living with MND and I had decided to get mine fitted whilst I was still able to do so (things become more complicated the longer you leave it and their weaker your breathing becomes). I had to have a couple of nights in hospital, although the procedure itself only took about 20 min. I was awake throughout the procedure and only lightly sedated so the endoscope camera, guide wires and tube were passed down my throat with my full knowledge – not very pleasant! Anyway at least I got it done and now have the peace of mind of knowing that when my swallowing becomes a real issue then I will be able to use my PEG to take my medication, fluids and nutrition. Despite the relief of getting this over with I also have experienced feelings of sadness that this is another event which marks the progression of the disease.
I find it increasingly difficult to blog as I am relying on voice recognition to type. This has put me off sitting down at the computer, but I’ve decided I need to be more proactive. So I’ll leave you with this blog as I’m off to watch the Tour de France but I’ll write some more blogs in the next few weeks. Next one: a great holiday and amazing fundraising.